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New Message on Pituitary Chat

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From: sarahsm
Message 1 in Discussion

Hi Everyone,

I am about 7 months post-op for removal of most of my pit tumor. I've been on 
ocreotide (sandostatin LAR) since november; it is working great at controlling 
the biochemical effects from the residual tumor.

However, last month, about 66% of my hair fell out. Lots of blood tests later, 
my biochemistry looks completely normal. So, that leaves the hair loss as a 
side effect of the octreotide (which is relatively uncommon).

(the only way to know for sure is to go off the octreotide, but it seems the 
only real alternative treatment option is radiation therapy. my endo told me 
that cabergoline in the high doses required to treat acromegaly has just been 
shown to lead to high risk for heart disease. but that is a problem to deal 
with a little later.)

So, I am wondering if anyone else has experienced this 'cosmetic' problem with 
octreotide and what you decided to do about it. I can live with the very thin 
hair I have now, but I'm not sure I can deal with patchy bald spots (I am 
supposed to give public talks as part of my job).  If everything else is 
perfect and it's just the hair - maybe I should look into wigs.

Thoughts? Advice? I feel like acromegaly has already done so much to alter my 
appearance; I'm not sure where to draw the line in the treatment.

Sarah



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